Pregabalin side effects

[Geraldine]

I was on 150mg of Pregabalin for over a year until I began seeing a new Pain Manangement Doctor ( the lovely Dr Greenslade in Bristol). Following surgery he suggested, in November, that I increase the dose in 25mg increments and hopefully get to 600mg a day. I started this in December and by giving it a week between each increment was coping with the more common side effects. However once I got to 300mg a day I started noticing a new symptom - swollen feet and calves. This swelling did go over night, thought it caused several visits to the loo!! I've now got to 425mg a day and am now getting a swollen abdomen. This is putting a strain on my already unstable bladder and tight pelvic floor muscles. I just wondered if any else had the same side efects and if so how do you cope. Also will these new side efects be less of a problem the longer I stay on my current dose. I don't plan to increase the dose any more at present.
Julia

[Violet M]

Julia, a lot of people have mentioned weight gain with pregbalin although your problem sounds like it is associated with fluid retention, right? Maybe you could speak with your pharmacist about it and see if they have heard of this and also, notify Dr. Greenslade about the problem.

Violet

[Jane]

Hi Geraldine,
I am now six years post-op for two PNe decompressions, among other operations that were necessary following a "bad" operation. I was on pregabalin 150 per day and was being encouraged to increase to 900 by Dr Baranowski, Pain Management Consultant at the Hospital of Neurology. I managed to stick to the 150 for two years and then thought I was losing my mind! I kept forgetting what I had said and repeating myself. I did put on weight but also my knuckles started to swell and I could wear no rings and one of my collar bone nodules is still so much bigger than the other. I took myself off to my GP and asked for a dementia test - he actually laughed and said I did'nt need one and we discussed my medication and I decided to come off the meds which I had to do very gradually. My knuckles are back to normal as is my weight and my memory is pretty good. I now manage with the odd 25 which contrary to the suggested accumulative doses does work for me. I also have homeopathic remedies because my body seems to reject most meds, so I cannot say that this would be the norm for other people.
I wish you well.

Jane

[calluna]

Well, I am at the beginning of taking pregabalin so I haven't got any accumulated wisdom. I am taking it in combination with topiramate and at the moment am up to 50mg topiramate and 225mg pregabalin. I think this may be the dose at which I will stop - it seems to be very effective indeed. I'm taking 75mg pregabalin in the morning and 150 in the evening at the moment (only have 75mg capsules to play with) so am going to ask to move to 100mg caps and take 100mg morning and evening, a slight reduction to 200mg a day which I hope will still be ok. 150mg was not quite doing the trick.

So far I have neither gained nor lost any weight. I have however had some odd moments when I've been completely unable to do mental arithmetic, very weird. I used to be able to do Fourier transforms in my head, now that was many years ago and I'm not kidding myself that I could do that now, but I ought to be able to add 130 + 56 without even thinking. And instead, there was just a total blank, and my mind did not know how to proceed. I've never experienced anything like it.

Now if that were to persist, I would not continue taking the medication that was causing it. Same with the topiramate, I did identify that increasing the dose at one point caused some strangely aggressive behaviour. Fortunately that has now gone but it did scare me considerably.

I have not noticed any fluid retention at all and I have neither gained nor lost any weight. I have been having problems with paraesthesia in my hands, from the topiramate, but that seems to be settling.

My rule with titrating the dose upwards, with any medication, has always been to wait until the side effects from each increase have gone completely, before moving to the next step upwards. I have always taken the weekly interval as a minimum - to be expanded if required. For instance, the interval between my last increases of pregabalin was more than two weeks. But your instructions may have been different, I don't know.

I do hope you get this sorted out, it sounds most unpleasant. What has your GP advised?

[Geraldine]

I have decided to slowly reduce the dose of pregabalin until I get to a level where the fluid retention and decresed urine output are less of an issue. I had been very careful increasing the dose - only going up in 25mg at a time and often wating two weeks in between the increase. Dr Greenslade suggested increasing every third day but said if the side efects too much then leave it maybe three weeks before trying again. I couldn't cope with every three days.
When I mentioned to my GP that I was having the problem of swollen legs + decreased urine output she just said "it's just the pregabalin" - at that time I didn't know that could be a cause of it. She was quite disinterested and gave no further advise - but that's nothing new! I have had very poor support from my GP's and she was not impressed when I self referred to DR Greenslade as her attitiude is "you've got pelvic pain, you must just learn to live with it" I have to make another appointment with Dr G - but that could take a while as getting hold of his secretary is not easy.
Calluna - I know what you mean about the memory issues! I was trying to play the concentration game with my 5 year old Grandson at the weekend and I really struggled!! and that is something new. Mind you my grandson thought it great as he kept winning. I have a friend who was on 600mgs of Pregabalin a day for 4 years and terrible short term memory issues but once she came off it she gradually got back to her former levels.

[helenlegs 11]

It can make such a difference having a supportive GP Julia. Could you change, either within the practice or to a different surgery do you think. My worry with changing is that you will get stuck with a similar attitude as 'up North' everyone takes the view that there is nothing that can be done for pelvic neuralgia, that's if they accept that it exists at all of course.
I now have a complaint in to the medical ombudsman about my GP as I have had such a struggle with her. EVERYTHING has been a battle, even the smallest request, but because I have been insistent, I have managed to achieve the smaller things. I still haven't managed a proper referral to Dr Greensalde however (my appointments with him were due to a fortuitous admin error ) Anyway as the lesser requests have been battled about and eventually won, (it took me well over 3 months to get prescribed pregabalin even tho' Dr G had recommended it for instance) the ombudsman has come back with the decision that I have been treated fairly and within the realms of what a GP is able to do as I am so complicated!!! as judged by their own medical adviser anyway. (they only complication being that the NHS are useless about pelvic neuro pain!)
I would have though the more complicated an issue the harder they should try for you?
I now have to come up with reasons why my complaint should be reviewed by the next panel up. My head is spinning with it now so I have done nothing so far. I am really complaining about the whole of the medical set up in this country regarding the diagnosis, recognition and therapeutic treatment for pelvic neuropathic pain in general but was told that I can only complain about an individual or a decisions making panel, like the PCT (as it was then)
One thing is certain I hope never to bump into that particular GP again if I can possibly help it, trouble is the surgery is literally around the corner and I have to pass it every time I go out anywhere .
The whole thing can get you down so very badly, I would advise you to consider a change. This is a time when you do need a GP's support and many people here are testament to the fact that there are those that can and will be supportive.

OOOps seem to have ranted a bit
Also wanted to sat Hi to Jane ~waves~
I think it is interesting that Dr Baranowski does (maybe only did?) send his private patients for decompression surgery but stops at neuro stimulation for NHS. This may be because he has changed his mind over how effective surgery can be I guess as yours was a little while ago but I wonder what he offers his private patients currently?
Have you any plans to pursue more treatment for your pelvic pain at all?
Lovely to here from you again although I wish you had a less painful tale to tell of course.

if anyone can think of what I can say in my letter to the ombudsman's reviewers; always thought that the ombudsman WAS the ultimate judicial review?? let me know
I can think of a few things but they aren't printable .

[Jane]

Hi Helen (?)
Nice to hear from you.
Dr B does see patients on the NHS as I had to transfer to NHS after the nerve blocks were paid for by the hospital who "did it". He heads up the Pain Management Team at the National Hospital for Neurology. He is not a surgeon and passed me onto Prof Carlstedt and the NHN who did the decompressions TG also on the NHS. I really would like to know the latest news and technology in this country cos I am not sure if there is anything else for me or I just have to live with the pain. Dr B has more or less discharged me so I don't know if there are any advancements there and I had one follow-up each time with Prof Carlstedt and was then discharged. He did say that I was only the fourth person he had operated on, so it was obviously early days and whether he has moved forward in this field, I don't know. There was talk of him retiring and he had no-one to take over from him, he told me that no-one was interested in this sort of work (whats new) but whether he still going I could'nt say.
Would love to hear from anyone with updates in this field.
I am sorry to hear about your problems regarding the GP and what a shame about the ombudsmen - I think they all close ranks in the medical fraternity!
My GP has been fairly supportive but has'nt a clue what its all about. If it were me and I was presented with a new medical diagnosis, I would want to research and extend my knowledge - but hey we are not all the same!!!!
Wishing you well and at least some pain free days.

Jane

[helenlegs 11]

Profesor Carlstedt is still available through his private practice but we don't hear anything about him these days with regard to pelvic decompression surgery. I remember someone saying he would retire in a couple of years??
The only news is that Bristols Frenchay Hospital have an up and running pain clinic (NHS) headed by Dr Greenslade (mentioned by Geraldine/Julia) patients can be assessed for pudendal and other pelvic nerve problems and diagnosed with the help of nerve block injections and botox, administered with ultrasound guidance. Bristol can supply the full package for actual pudendal entrapment, as Dr G refers patients for decompression surgery. As far as I know there is no physiotherapy set up there for people who may need conservative treatments.
Dr Greenslade trained with Professor Robert in Nantes. There are a few people on this forum who have been through the surgery there. They can only offer pudendal decompression, anyone with cluneal or any other pelvic nerve entrapment is hopefully referred to France and Prof Robert. Trouble is this referral doesn't happen. I have tried and failed (so far )
An internet friend of mine who has had (piriformis/sciatic decompression ) surgery with Prof Carlstedt too actually, still had problems (as you have ) and has organised to go to Germany for a sacroiliac fusion. She actually billed the NHS for it! and it worked The cost was just over £5000, so probably good value ?? although I would have to read how she did it, again before posting how she did manage this. I am still trying to put my case to the NHS and ombudsman but as you say they do clan together so I am going to have to make my appeal extremely good to get anywhere.
The good news is that the NHS has recognised that pelvic pain in general is a massive problem equal to back pain and asthma sufferer numbers and is paying attention to what to do with us. The process of drawing up NICE guidelines for pelvic pain is ongoing and should happen fairly soon
I do have a lovely local pain consultant now so have almost bypassed the GP now (well would NOT go and see her now no matter what was wrong with me) I have just started taking pregabalin again and so far it is helping a bit.
I am waiting (impatiently ) for my copied in letter from the local pain consultant which should show the results of my recent (positive)nerve conduction tests and spinal MRI scan (negative) which proves that my entrapment is pelvic and not spinal which has been part of the problem up till now.
Still doubt I will get anyway but I definitely will not give up.
I remember your posts from some while ago.
Did you used to be in touch with a girl called 'suzie' who lived/s down south btw??
Take care,
Helen

[Jane]

Thanks for the information Helen. Wow that was really something your internet friend managed in billing the NHS - that could be a break through for a lot of people! Have you had a decompression? From what you say am I right in thinking that some/most sufferers get a lot of relief from a decompression? It has helped me a lot but I still get daily pain (not too bad) however at the moment I have a pain flare and it is not too good.
I would so like to hear from others how they are after a decompression as I feel sure surgery has come a long way since I had mine done.
Yes I was in touch with Suzy from Kent. She had some sort of spinal op and I have'nt heard from her for a long time. I did ring and write but one has to back off if not needed.
You mention your spinal MRI. Do the nerves actually show now on an MRI or maybe the ability to read them has progressed, as when I had my two MRI's nerves did not show.
I do hope you get some results soon and some help with your situation.

All the best
Jane